New to all this, Any tips? Stage IIIC colon cancer

Best wishes
Carrie,

I'm really sorry about your situation. I just recently got diagnosed with rectal cancer at 36 years (yet to be staged). I also have 2 little ones (1 1/2 and 4 year old) and am lucky to have a wife to stand by me. Although I can't offer any advice, I just want you to know that my thoughts and prayers are with you.

Side effects - stage III with Folfox
I was stage IIIA 2 lymph nodes out of 19. I had a lot of side effects from the folfox - all the same ones you have, mine started right away. I don't have children, but they gave me decadron with the Emend for three days after chemo for nausea - along with zolfran, compazine and attivan. What the decadron did - it is a steroid - was give me energy, no nausea and an appetite, the fourth day wasn't so good - I crashed - but it helped me make in through. My dose was lowered consistently, but I made it through all the 5FU and all the radiation with 5FU, I only made 5 out of 8 with the oxalyplatin.

Ask about the decadron.

Pam

Press on!
Hello Carrie

I was diagnosed Stage IIIB last year, also with a tumour in my ascending colon (I was 48 at the time). I had nine rounds of Folfox and got off pretty lightly - I had the reaction to cold that you describe, but that only lasted for about 48 hrs each cycle. I was given an infusion of Granisetron for the nausea (I think it's called something else in the US) plus some anti-emetic pills and that worked very well (I only threw up once and didn't really feel that nauseous - I never lost my appetite). I took very few steroids (about a quarter of the dose originally prescribed) as I reacted badly to them (felt very wired, couldn't sleep and worried about getting fat). I can't remember having cramps but I had mild pins and needles which did get a bit worse with every cycle, but were really more of an annoyance than anything else (they continued for a few months after chemo but now I barely notice them). I lost all sense of taste and had a permanently sore mouth, but learnt how to deal with it (soft toothbrush, salt rinses, mouth washes etc). My hair thinned during the first few cycles but then stopped - I returned my wig to the shop unworn. I did get very tired, but I'm a single mother with two children (8 and 12 when I was diagnosed) so had to keep going. I felt pretty wiped out on chemo days and for 48 hours afterwards, but even then managed to get meals on the table. For the rest of the time I functioned pretty much as normal. Perhaps the side effects did get a bit worse with each cycle, but nothing that dramatic. I drank a lot of water, juiced, had various alternative therapies (e.g. reflexology, acupuncture), walked every day (even with a chemo pump attached!) and took a wide range supplements (I know that's controversial during chemo) which I still take today.

It's now just over a year since I finished chemo and a few weeks ago I would have told you that I was feeling better than I have for years (right now I'm recovering from an exhausting summer and a bad cold - first illness I've had since surgery - but hope to get back to that state again soon!).

Press on - there is light at the end of the tunnel!

Catherine

Welcome to the board
I was dx 3B in April "08, tumor in the same place 3 out of 41 lymph nodes positive. I was a MESS in the beginning (just did #8 last week) I had mouth sores, nausea, fatigue. They reduced my treatment by 20% on round #2 and round #5 started Emend and decadron. I had originally lost 25 pounds, no appetite, no energy but since these meds I have gained my weight back (and a couple extra) and although chemo day (Wed) and pump day (Fri) I get really tired I have learned to lay low the first couple days and it seems to be better. In the beginning I felt so crappy that when I did feel good I over did and then just dragged for days. I personally feel the treatments get better, or you just learn to understand the new sensations your body feels. Get rest when you need it, hydrate often. Keep positive, there is an end to all this eventually. Good luck to you prayers coming your way.

CarrieL said:

Thanks for the info
Pam, I actually do get decadron right before they start the infusion, I forgot to mention that, but only take the other nausea meds the rest of the days, I'll have to ask about taking more decadron because I pretty much do not feel like eating much the first 4 days or so. How many rounds of chemo did you do? Did you lose any hair? Mine seems to be thinning quite a bit. I am schedule to do 12 rounds of folfox, every other week and no radiation at this point.

Folfox and other stories
I was IIIA and was scheduled for 8 rounds of Folfox, I completed 5 and then had to drop the oxaliplatin because of the side effects. I was willing to continue but my doctor said no way. I didn't lose any hair - oddly my nails and hair grew like there was no tomorrow during chemo - I figured it was the leucovorin (basically vitamins). My first three rounds were so hideous they changed me to emend with decadron - I lost 45 lbs during treatment. I also took zolfran and attivan as needed. I did finish my last three rounds with the 5FU and leucovorin. Why no radiation? I had 28 days with 5FU five days a week during that time. I am currently 1.5 years ned.

I also had surgery first - with 20 cm. of colon removed.

Pam

Russell05 said:

Hang in there
Hi Carrie,
I hope you are feeling better. It will get better trust me. When I was first told of my Stage3 I was not so shocked but it was one hell of a rollercoaster ride.I was 42. Now I am happy to say I am 47. So I can to say, "I been there done that".....hehehehehe thats what they say, but not many can say they have been where I have been and where you are headed.
I did have a recurrance that appeared in my liver but was still colon cancer. hmmmmmm as said to myself. How now said the brown cow? what should I do? I have reached all my goals I had set when this first started.So I decided to go ahead and start this all over again. Now today I have had a liver recection, more chemo, and more chemo, lol but hey guess what I am still here doing well, NED as of now. Back to doing the things I used to do and have set new goals for myself. "AND I AM GOING TO REACH THEM" make new friends, go different places. fish places I have never fished before. I just wanted to see my daughter graduate from high school, she has and even college. Started her own life and doing quite well.
To make this short as it is long.....hang in there, plan, keep good spirits, smile when you can and thank god for each and every day. Make the best of each day even if all you do is get out of bed and sit on the couch and have fun with your little ones.

Any help I can offer just let me know I will help all I can. Russell Jefferson

Colon/Liver Cancer
Hi Russell,
My story is similiar to yours. I was diagnosed with Stage 4 colon cancer and when my surgeon did my surgery, he saw a spot on my liver. I had the first surgery on 5/20/04 on my colon and 6/30/04 had my liver resectioned. I also had a chemo burn which is now causing me to get biospies due to the scar tissues. It all happened to me when I was 43 years old and today I'm doing good. Keep on fishing!

CarrieL said:

Thanks for the info
Pam, I actually do get decadron right before they start the infusion, I forgot to mention that, but only take the other nausea meds the rest of the days, I'll have to ask about taking more decadron because I pretty much do not feel like eating much the first 4 days or so. How many rounds of chemo did you do? Did you lose any hair? Mine seems to be thinning quite a bit. I am schedule to do 12 rounds of folfox, every other week and no radiation at this point.

Hey Carrie
Hi! I read your posts and it seems like your treatment is what I will be starting in another two weeks. How soon did you notice your hair thinning? I have heard some people don't lose their hair.
I will be doing 12 rounds of the folfox every other week and no radiation. How are you doing overall? I hear alot of people make it thru some sessions before starting to have more signifcant side affects, but everyone is different. I also have read posts on here where several people did not have many side affects at all which is nice.
I am not familiar yet with the names of all the drugs that will be involved when I start treatment. All I know is the Folfox and 12 treatments, plus I recognize the names of avastin, oxal, and leucovorin (sp).
Good luck with your continued treatment, and God bless you!
Peace
Jeri

NanD said:

You're doing fine
It's great that you are on this site. You will get lots of good advice and caring. Nothing new to add to the advice about getting throuh the chemo, just that you should and you will. I was diagnosed stage III C with 13 of 27 nodes positive. I made it through all 12 rounds of folfox and am cancer free four years later! The chemo wasn't fun, particularly the neuropathy and tiredness, but it wasn't as hard as I thought it would be. Accept all the help you can get with your children, when people offer to help they really will! My own instinct was to try to be a brave and uncomplaining patient and over time I learned to let myself take it as easy as possible.

When help is offered, take it!
NanD, that is EXCELLENT advice! I also tried to do the brave, uncomplaining thing first time around. When I had my recurrence, my mother had passed (we were actually in different hospitals, different states, at the same time; i recuperated, she didn't) so I HAD to have help. My children don't live in town with me, so after the initial surgery recovery, i learned to depend on my friends. One close friend was my "scheduler" and she made sure there were people to take me to my treatments and sit with me the first night to be sure I ate. My neighbors brought food, visited me, called me to see how I was doing, made sure I was eating, helped with housework, on and on and on! What a difference their love made for not only me, but in sharing my experience with them it helped them to not only cope with my illness but to see that people do survive even when it is very ICKY while being treated!
Mary

Russell05 said:

Hang in there
Hi Carrie,
I hope you are feeling better. It will get better trust me. When I was first told of my Stage3 I was not so shocked but it was one hell of a rollercoaster ride.I was 42. Now I am happy to say I am 47. So I can to say, "I been there done that".....hehehehehe thats what they say, but not many can say they have been where I have been and where you are headed.
I did have a recurrance that appeared in my liver but was still colon cancer. hmmmmmm as said to myself. How now said the brown cow? what should I do? I have reached all my goals I had set when this first started.So I decided to go ahead and start this all over again. Now today I have had a liver recection, more chemo, and more chemo, lol but hey guess what I am still here doing well, NED as of now. Back to doing the things I used to do and have set new goals for myself. "AND I AM GOING TO REACH THEM" make new friends, go different places. fish places I have never fished before. I just wanted to see my daughter graduate from high school, she has and even college. Started her own life and doing quite well.
To make this short as it is long.....hang in there, plan, keep good spirits, smile when you can and thank god for each and every day. Make the best of each day even if all you do is get out of bed and sit on the couch and have fun with your little ones.

Any help I can offer just let me know I will help all I can. Russell Jefferson

Hey You!!
Just wanted to say HI Russell. My regular email is down and has been for some time. One day I will take the time to get it figured out. email me through here if you need to or you know you can always call. glad to hear you are doing so well, you are always in my prayer, friend!! Coming to Colorado any time soon??? Hope the hear from you soon, bye Russell
love and God bless-
Val